Hvam 8620 Kjellerup
When did you get your diagnosis?
What were your first symptoms?
Decreased power and sensory disturbances. Cognitive impairment by i.a. fatigue, short-term memory loss.
What thoughts and feelings did you have when you were diagnosed?
Had no disease recognition in the beginning. The feeling that it was not me who was being talked about.
How did you tell your immediate family and circle of friends that you had multiple sclerosis?
My youngest daughter was in the conversation with the chief physician when the diagnosis was made. It was said as it was, again with a covert denial that it was not me who was in question.
How did your immediate family and friends react to the fact that you had multiple sclerosis and how do they deal with it today?
It was a relief for them that they were given a diagnosis that they could relate to. Today it is hard for them to see how the disease has changed and left its mark on me.
What type of sclerosis do you have?
What medicine do you get?
Aubagio 14 mg
Do you have any side effects from your medication?
Weight loss, decreased appetite, metallic taste in the mouth.
Have you changed medication / treatment?
Why did you choose this medicine / treatment and did you influence the choice yourself?
It is the chief physician who has determined the medicine, and I have not had any influence on it.
Are you taking any alternative medicine?
How often do you get an MRI scan?
Once a year
How many scans have you had and when was the last one?
The last one was in November 2019. Since 2014, I have been scanned approx. 8-10 times.
Do you and your neurologist talk about your development in multiple sclerosis based on your scans?
Yes - He is good at informing and writing it in understandable language. I'm always called in for a conversation.
How does your multiple sclerosis affect your daily life?
My everyday life is very much affected by multiple sclerosis. I have always been the one who took the lead and had many balls in the air, both professionally, privately and socially. This has changed markedly. Today, we must think ahead and prioritize in relation to which things are most important to spend my energy on. In the past it was always me who helped others, today I have to ask for it myself, which is a big challenge for me.
Have you accepted your multiple sclerosis and how do you deal with it?
No not 100% yet. I have been "forced" to accept it because of my physical condition. I have to use various aids, which is difficult for me, but it is necessary if I am to get something out of an excursion. for example.
What is your occupation?
Social and health assistant - Flexjob - 10 hours
What are you working on or working on?
Nursing assignments, i.a. medicine, injection, documentation
What educations do you have?
Social and health assistant
What are your hobbies or what have they been?
In the past, it was especially the garden and reading books. Today it is children / husband, friends, creative (sewing, knitting, crochet), audio books.
Have you changed after the diagnosis and in what ways?
Yes, I have changed both in terms of the physical but also the mental. I do not have nearly as much mental surplus anymore as before and I have a need to withdraw from social contexts if there is too much "noise".
How do you feel as a human being today?
More tolerant in terms of things not having to be perfect all the time. And that I do not have to be the one to control it all, but well let others do it for me.
Do you get outbursts of anger and what does it do for you both positively and negatively?
What makes you happy?
When I reach what I have set out for. Being with friends and family, and watching my kids feel good.
What makes you angry?
When the disease is used as an argument where it is not justified. Injustice. When the disease prevents me from doing anything I want to.
Do you train and how often do you train?
Twice a week by a physiotherapist.
How does exercise affect you positively or negatively?
The training helps me maintain my strength for as long as the sclerosis allows. It takes physical energy but it provides mental energy.
Do you find that there are some who turn their backs on you or opt out of special events?
What is your motto, favorite quote or slogan?
Seeing opportunities rather than limitations
Do you live by the sclerosis principles with diet, etc. and can you feel a difference between before and after?
No, as my weight is already declining.
What has your sclerosis given you of positive experiences or new hobbies?
I have more surplus to the creative, which was a big interest before I had kids.
What has your sclerosis given you of negative experiences or hobbies you have had to give up?
The physical. Hiking in the mountains on vacation, and long walks in general. Socially in the form of sports.
Life has many colors, what was your color before the diagnosis and what is it now?
Green before diagnosis - Yellow / red - after diagnosis
What do you think is the best thing about having multiple sclerosis and what is the worst?
The best thing is when you find out what the options are, despite the disease. The worst thing is to accept the limitations of the disease.
Where are you in 5 years and what is your biggest dream?
My biggest dream is that I am still in the job market because my illness has not developed further.
Do you have any good advice for new or old with multiple sclerosis?
Accept the help you can get through the sclerosis association. Listen to the advice and guidance provided by the hospital. Take a stay at a multiple sclerosis hospital.
What do you think of the job sclerose.info is doing?
It gives a good insight into how different we are, despite the same disease. One can find a lot of inspiration by reading about others.
Tell us a little about yourself and your life so far?
I live in a house with my husband, who I have been married to for 32 years. We have two girls on resp. 25 and 28 from India, two sons-in-law, a grandson of 2 and another on the way. We have a cottage, which is the gathering point for our family.
I am a trained social and health assistant and am really happy to work. It is a big part of my identity to be able to be allowed to work and be something for others. There are others who are put in focus and not me and my illness. I spend a lot of time on the creative when the profits are for it. We have a close and good social network with friends who are there, despite the diagnosis.